Hello, I am new to the AVM community. I have had severe Ha's since I was 15. I have seen the same neurologist.To make a long story short I began having cognitive changes as well as many other symptoms that I cannot tolerate, I finally had severe depression last year because of them. During treatment for my depression I mentioned my speech and cognitive changes and testing was immediatly completed. They sent them to my same neurologist who as usual never examined me (yes) patted me on my head and asked if my ha's are in the same place that they have always been. YES, "then it is your depression" and sent me on my way. This is how I thought I had to live seeing him once a year trying very high doses of Topamax (which I now think might be a blessing.
I thought I had to just deal with the ha's and etc. During those 20 years I did have 2 MRI's, the AVM appeared in both. The radiologist just made note of it as it is a common thing seen everyday, however the neurologist has always told me that my MRI's have been normal.
Should I be thankful that it has not bleed in all of these years? Or angry that I have very debilitating effects that seem to be coming from it. (Did I mention I had a Gran Mal seizure when I was 20 after I had my children.
I was asked my by counselor to see another neurologist. He found the AVM on MRI and has already made appts for a neurosurgeon/vascular and more tests.
I am in shock from the entire news. Scared and unfamiliar with the next procedures to come. Any comments? I am counting my Blessings!
Hello and welcome to the site. I assume HAs refers to headaches. It is unfortunate but most doctors including neurologists have no clue when it comes to AVMs. It is perfectly normal to be scared. You are in what I call the OMG stage. Remember that we have over 4664 members on here and that you are no longer alone!
Wow! First, welcome to our group. You'll find lots of helpful information and people here.
It's incredible to me that the neurologist never addressed the AVM. I'm guessing he perhaps had never seen one? One would think the radiologist would have known what it was. I would have thought after the Grand Mal someone would have paid a little more attention.
I'm glad you at least have the correct diagnosis now and are moving forward.
That is a good thought maybe he had never seen one. Maybe I should send him some education materials. The seizure they said it was from my pregnancy post partum because I had twins. I never read that in the labor book! I was young and went on with it, just like I have all these years with my ha's. Glad to be heading in the right direction. Cathy
Wow, CB Nurse, I am glad you are finally on the right track at last. A couple of decades ago, a lot less was known about AVMs -- in some ways, it may be to your advantage that treatment was delayed, though I appreciate that having years of headaches that might have been prevented is very upsetting. After you get treatment, you may wish to write a letter to your former neurologist. Best wishes!
About the seizure post-partum from twins, there is another possibility: pre-eclampsia. I developed pre-eclampsia during labor with my twins and an iv of magnesium sulfate for the next three days to prevent seizure activity. If your blood pressure went up significantly during your labor, that could start a seizure; of course, it would also affect the AVM, and it is extremely fortunate you didn't have a bleed at this time.
There seem to be a lot of medical professionasl who have little knowledge of AVMs and/or are condescending. I think it's good that you're counting your blessings because now you are getting the attention that you should have gotten all along. But I understand the anger because I admit I have some toward the medical professionals, especially neurologists, that I have dealt with over the years.
May your new doctor and the new tests lead toward finding a way to help you.
C.B. Nurse, I'm relieved for you that you'll be seeing another neurologist, as well as upcoming tests & appt. w/ a neurosurgeon (hopefully one with LOTS of experience w/ AVM's!:)
It's extremely frustrating & scary the lack of knowledge for vascular malformations existing among HCP's everywhere.
Best wishes on your upcoming appts! :)
I think you are right they did think it was from the birth. I do however thank my luck stars that it did not bleed at this time. I will think about the letter. Cathy
I am looking for a great neurosurgeon. Any suggestions on how to find the right one? I see that so many of them are top in their field, however since this is so rare should I trust someone who has only seen one or two? Are the AVM's different? Different in the fact that it appears one may need multiple procedures to take care of one AVM. Thanks for any direction you can point me in. Thanks Cathy
One item sticks in my mind from when my wife's AVM was first treated (about 1991 with proton beam at Mass General). There was a man there about our age, maybe a little older, being treated the same week as us. About day 3, we realized each other was on the same journey, with back to back schedules.
In hearing about his case, he'd had a "stroke" according to his then neurologist TWENTY YEARS prior. His neuro had been treating him as a stroke victim for TWENTY YEARS!!!!!!!!!!
Only when this neuro retired, and a younger neuro took over his practice, did the man first learn that he had not had a stroke, but in fact had an AVM. So he was just now having it treated, TWENTY YEARS later..............
Congrats on getting to someone more on the ball. Ever since that incident, I am more skeptical with answers DR's provide. Second and third opinions, on something like an AVM, are a must in my mind.
I don't post a lot but this site has been a godsend for helping me understand my AVM, so welcome and I hope it helps you as much as it helps me. I agree with Barbara H. in that it is unfortunate that Doctors that don't have the capability to treat an AVM won't just admit it and refer that patient to a M.D. that is familiar with AVM's. The first neurosurgeon I was referred to didn't have gamma knife or cyber knife capabilities (only safe treatment for my AVM) he wanted to have me get MRI's every 6 months and just monitor my AVM. I kept searching the internet and called a different neurosurgeons office & was told he couldn't treat my AVM but referred me to the Culichia Group & I had cyber knife procedure in June. No major side effects so far so now I wait a year to have another MRI or angiogram. Good luck & we are all hear for you..